Friday, September 20, 2013

A Race I Didn't Enter

One of my proudest accomplishments was completing the 2008 San Diego Breast Cancer 3-Day. I chose to enter that event, I did the fundraising, I trained, and I walked every step of that almost 60 miles. I was so proud of myself for sticking with it. It was truly an amazing feeling to walk across that finish line knowing that I pushed past my aching tired muscles, blistered feet and being away from husband and kids and I did it. .

Now whether what followed was strictly brought on by the physical stress of that event or whether it was a combination of things or strictly coincidence I'll probably never know. Shortly after completing the 3-Day I woke up with some unexplainable muscle pain. Over the next few days the pain became debilitating and severe and as it faded I was left with extreme weakness in my arms. It was so bad in fact, I couldn't drive or even write. Off to the doctor I went and that pivotal event is what led me on my journey to a final diagnosis of Lyme Disease and related issues a year and half later.

As I was mulling things over the other day, I thought how God is like my personal trainer and that the last 5 years were like a race. I would say a 5k. The problem is, it is a race I didn't enter. My "trainer" entered me in the race believing/knowing that I would make it. That I would cross the finish line. I couldn't have disagreed more but have I have pushed through, with my trainer by my side. Day by day, moment by moment, I have pushed through and made it this far. The issue I'm struggling with now is the fact that my trainer has once again entered me in a race I didn't ask to run. I feel like I'm starting the most grueling marathon, no lets say triathlon in the world. The run is all up hill. The road race is all up hill on a pothole covered road. The swim is in the midst of rough waters with almost hurricane force winds. I may have the best trainer in the world, but my initial reaction is He's nuts and He has set me up for failure. I already feel like I've lost the race and I have only run the first hundred yards. In my rare moments of clarity I acknowledge that those feelings are false and that He knows what He's doing and I am doing my best to trust Him every moment of every day. My faith is being tested and the reality is I am scared. I am scared, and angry, and frustrated, and defeated and for me the peace that passes all understanding has not set in yet. The only thing I can do is hold on to the hope that His peace is coming and when all is said and done I will be victorious and win the race of my life.

Just over 3 years after my life changing diagnosis I sit here not feeling much better that when I started. I don't know that overall I am any better. A few things have gotten less problematic as other things have gotten worse. My burning nerve pain rarely makes an appearance while my brain function continues to get worse. I had a few days of fumbling over my words and not making sense a few weeks ago it made my wonder if that is what happens when someone has a stroke. My heart continues to cause me problems to which I still have no clear answer and the fatigue continues to plague me daily. Some days the only thing I manage to do is get the kids to and from school. My immune system is back in the trash. I'm back on multiple antibiotics and have been wondering where to go and what to do next. What else can I try that I haven't? Not much with out winning the lotto. We have held our head above water with the generous help of friends and family (for which we are forever grateful) but the bank accounts are drained. Insurance still doesn't want to play nice in the sandbox of the Lyme world and without winning the lotto the options become very limited.

After talking with my doctor, we have agreed it would be worth it for me to try something called ozone. It is not a new procedure but more and more evidence is coming out stating the ozone is beneficial to people with Lyme. I will go in once a week and have a pint of blood removed. As it is removed it will be passed under UVC light which should kill different bacteria and such from my blood. It will then be infused with ozone which is basically adding an extra molecule to my blood. Then it will pass back under the UVC light as it re-enters my body. The procedure only lasts about 20 minutes and I will start with about 10 sessions. I am told it will very possibly be a rough 3 to 4 months once I start but I should see improvements after that and then maybe only do it occasionally. This costs roughly $150 a treatment. It's not exactly cheap but it is better than the cost of a very promising treatment the doctor talked to me about. Although this other treatment could be shared with my daughters the minimum it would cost us for the year it takes to do is $17,000. Something that's just not lying around at a moment.

This brings me to the toughest thing I/we have been dealing with over the last few months. I know I have mentioned that both of my girls most likely have Lyme. In fact during our visit to the Hansa Center last year, they confirmed that my now 10 year old in fact had active Lyme. (see previous posts) We did some natural herbal and homeopathic treatments for both of our girls and have been in a constant quandary of what to do next? We need to do the blood work which is not cheap and we need to decided what doctor we are going to take them to. I recently talked with the doctor I wanted them to see and he has stopped taking insurance so our options are slowly being narrowed and really we will be left with one. My girls have doing ok but very recently things have changed and kind of quickly which is where this being thrown into a triathlon has come from. My youngest daughter who just turned 7 had been struggling in school last year. Without going into all of the details the bottom line is she was diagnosed at the beginning of summer with executive functioning issues and Sensory Processing Disorder (SPD). I will have to write another post to give you all the details of those two issues but they are fairly significant. A lot of autistic children suffer from SPD but my daughter does not fall on the autism spectrum. With the number of autistic children testing positive for Lyme I felt that it was probably the same case with SPD. Sure enough between my doctor and the research I have doing it is very evident the Lyme can absolutely trigger SPD. And very similar to Lyme, SPD is not well accepted in the medical community. I was kind of told by my pediatrician, whom I really like, that in general the medical community doesn't care if your kid struggles with reading, writing, reversing numbers, etc...Insurance certainly doesn't want any part of of it. So we are left trying to pay a minimum of $325 a week for the therapy and help she needs or doing the dance of wording things so that insurance will at least approve an evaluation by an occupational therapist. If we can at least get an eval, then we pray we get a good OT that can determine there are things my baby needs help with that the insurance won't throw a fit about. We are currently waiting for the approval for the evaluation. In the meantime my little one is starting to have a really difficult time and my husband and I are so unprepared with how to deal with this. Daily meltdowns make you feel like you are dealing with a spoiled 3 year old but the reality is she just doesn't know how to deal with how she feels from everything in her outside world. It is heartbreaking and frustrating on a daily basis. Part of me can't help but feel the extra difficulties of the past week are somewhat due to a strong antibiotic she was put on for an ear and sinus infection and that it is killing off some Lyme bacteria causing a flare in her symptoms.

The bottom line is all of this at the moment has left me feeling very guilty. Every once in a while I can tell myself that this is not my fault. This is still so new and overwhelming though that I can't help but fall apart in desperate moments blaming myself for giving my girls Lyme and being the cause of their struggles and pain. I didn't know a heart could break so much and still manage to beat. I pray constantly that God just takes this away from them. As a mom, I want to take it all away. I hate to see my kids suffer more than anything. Prayer is about all I have right now as we try and navigate these rough waters. I'm sure I will be able to look back on this in the end and realize my trainer had it under control. For the moment, I need to relinquish my need to try to fix it myself and remind myself that God is ever faithful. He sees our struggle is by our side every step of the way. Breath by breath I have to continue on to the finish line of what seems to be an impossible race, regardless of the fact this is a race I didn't enter.

About Me

I am a 39 year old wife and mother of two beautiful daughters who lost her career in the fire service due to Lyme Disease. I love my God and Savior, spending time with family, the beach and photography. I have been on a journey to get well since 2010. Now while still fighting my own health battles I am having to fight for my kids health too. Growing in my faith and strength each day.